ZTTK Awareness Day · Sunday, September 20
Shine the SON-light on ZTTK Syndrome
From our Community to yours — we shine brighter together.
Your gift to the ZTTK SON-Shine Foundation goes directly towards spreading awareness so more people know about ZTTK syndrome, connecting families affected by ZTTK so no one has to navigate this journey alone, and giving families hope by funding the research that brings us closer to real treatments.
Join us this September — wear it yellow, share your story, and help us light the way for the ZTTK community.
We Shine Brighter Together!
ZTTK SON-Shine Foundation Inc · 501(c)(3) Public Charity · EIN 86-1926609
Every donation is tax-deductible to the extent allowed by law.
Our Awareness Day Goal
Understanding ZTTK Syndrome
ZTTK syndrome is caused by a change in a single gene called SON, located on chromosome 21. It was first identified in 2015, and in most cases the change happens spontaneously — it is not inherited from either parent. Because SON helps guide healthy brain development, a change in this one gene can affect a child in many ways, most often showing up as developmental delay, differences in speech and motor skills, low muscle tone, and in many cases, seizures.
A ZTTK diagnosis is often the beginning of finally having answers — but it can also mean stepping into unfamiliar territory as a family. That is exactly why the ZTTK SON-Shine Foundation exists: to connect families so no one navigates this journey alone, and to fund the research that brings the whole community closer to real treatments, one discovery at a time.
Share the campaign
Today is ZTTK Awareness Day. I'm wearing yellow to help shine the SON-light on ZTTK syndrome — a rare genetic condition affecting an estimated ~500 known patients worldwide. Join me: donate, wear yellow, and share to help more families find answers. #ZTTKAwarenessDay @zttkfoundation
Find Your Path
A family looking to connect with others?
Meet other ZTTK families, ambassadors, and community support.
Explore Connect →Want to learn more about ZTTK?
The SON gene, symptoms, diagnosis, and what a ZTTK diagnosis means.
Explore Care →A researcher or clinician?
Follow the science — active projects, publications, and how to get involved.
Explore Research →A Family in Our Community
“We did not just find answers for our son. We helped build a foundation so every family could find theirs.”
From four weeks in the NICU to helping found the ZTTK SON-Shine Foundation — Russell's family turned their journey into a movement.
Russell's family
Co-founders of the ZTTK SON-Shine Foundation
Wear It Yellow
On September 20th, wear yellow — the color of the SON-Shine Foundation — and snap a photo. Post it and tag us so your circle sees why you're shining. It costs nothing and it reaches families who need to know they're not alone.
#ZTTKAwarenessDay~500
known patients worldwide
2015
year ZTTK syndrome was first identified
1
gene — SON — behind the diagnosis